By Virginia ‘Ginya’ Carnahan, APR, CPRC
Dattoli Cancer Center & Brachytherapy Research Institute
Shirley Grey recognized the important role that loved ones play in the lives of men with advanced prostate cancer. Her beloved husband, Herbie, was diagnosed with prostate cancer in 1991 and died of his disease in 2008. Shirley learned a great deal about coping with a loved one who has advanced prostate cancer, and she is always ready and willing to share her experiences with others in need.
In fact, as a longtime active member of the prostate cancer support group Us TOO International, Shirley started a Partners Group in her local chapter and contributed to the development of the Us TOO Circles of Love Web site and materials. Shirley is also a trained nurse. Here, Shirley shares ten things she wishes she had known on her journey as a loved one when Herbie was initially diagnosed, and when his prostate cancer became advanced, or metastatic:
1. I wish I had known how to quickly access information and support.
It took a number of years after Herbie’s prostate cancer diagnosis for us to learn how to navigate to the sources we needed, but eventually we found our way to the US TOO support community, which has incredible expert and peer resources. By the time Herbie’s prostate cancer became advanced, I was well-entrenched in my local Us TOO group and knew how to find the information I needed as our situation evolved. I urge people caring for a man with advanced prostate cancer to take full advantage of the resources and support offered by established peer groups, medical societies, and informational sites like MyProstateCancerRoadmap.com.
2. I wish I had known what I didn’t know.
Now that sounds awkward, but what I mean is that it would have been invaluable to have known the key questions to ask Herbie’s doctors, for instance, or when to delve further into the meaning of a test result that wasn’t completely clear to us. Prostate cancer is a complicated disease to understand, and treatment options can be very confusing. It’s a hard thing to know what you don’t know – are you asking the right questions and getting the right information? I suggest looking to supportive online resources for a list of questions that you may want to ask healthcare providers at various milestones in your journey. Some questions for your doctor can be found here.
3. I wish I had known that it’s OK to seek the opinion of a different doctor.
Herbie’s first doctor was a good person and tried his best, but we really needed someone with more experience in treating prostate cancer. So, we found someone else. Your loved one may be going to the nicest doctor in the world, but if you and he sense that this doctor is not the one to provide the best medical treatment, pick up the phone and find another one. Most of us don’t want to hurt someone’s feelings, especially when that person is kind or is known as the “best” doctor around. But prostate cancer is not about the doctor’s feelings, it’s about your loved one and his medical needs.
I urge you to find the best doctor for you and your loved one, and seek another opinion if you think that is what you need.
4. I wish I had known it’s OK to question the experts.
In fact, it’s more than OK, it’s critical. At one point in his prostate cancer journey, Herbie’s tests revealed conflicting information about whether or not his prostate cancer was advancing. It might not have made a difference in his treatment, but I wish I had pressed the doctors further about why this was happening and what it meant. I also wish I had known to ask the tough questions from the beginning – how many men have you treated for early-stage and advanced prostate cancer? Will you answer our calls in an emergency? You have a right as a patient, or his loved one, to know how a doctor and his or her office staff will help meet your needs.
5. I wish I had known the incredible amount of medical knowledge and emotional support available from other people who had taken the advanced prostate cancer journey before us.
You set off down this unknown path hoping to find posted road signs that point you in the right direction.
But that’s not always the case. It may be the other “drivers” – the loved ones of men with advanced prostate cancer – who take the wheel with you. I learned to turn to these other caregivers to give me direction at critical junctures along the prostate cancer route.
6. I wish I had known how to help my husband open up with family and friends about his prostate cancer journey.
Herbie was very private, and initially wouldn’t tell our family or friends about his prostate cancer diagnosis. That felt very sad to me. I was finally able to push him to be open when his prostate cancer advanced. I would urge people affected by prostate cancer to consider sharing the diagnosis, for yourselves and for the people you care about. They will want the opportunity to be there for you, to share information or prepare meals or perhaps even to hold fundraisers on your behalf if needed. It’s also important that adult siblings are made aware of their potential prostate cancer risk so they can take steps to reduce their risk.
7. I wish I had known the importance of keeping a comprehensive prostate cancer medical portfolio.
When Herbie and I first visited various doctors and medical centers, we didn’t know to keep copies of all of his test results. These medical tests belong to you, so ask for copies from every appointment. You should even ask for the biopsy slides, and a copy of every PSA chart. Take notes during each medical visit so you can review it later – sometimes the overload of information prevents you from really taking it all in clearly. Put all of your medical history in a folder or three-ring binder so it is readily available. You will save yourselves needless hours of searching for this information when you need it quickly.
8. I wish I had realized the power I had to help not only Herbie and myself, but other people undertaking this prostate cancer journey.
After becoming involved with Us TOO, I actually started a Partners Group that met every month before the “main” patient meeting. You can help other “travelers” by paving their way as they enter the world of prostate cancer – it will make you feel better, too! You can find a list of existing support and advocacy groups, including Us TOO, here.
9. I wish I had known how much most health professionals truly want to help people with advanced prostate cancer and their loved ones.
We have had many doctors, nurses, nurse practitioners and physician assistants speak at our support group events, or review educational materials before we share them with the Us TOO community. Reach out to health professionals when you sense a connection – there are so many compassionate people in the medical community who are ready and willing to provide support.
10. I wish I had known that humor has an important role in getting through the serious subject of prostate cancer.
Of course, prostate cancer – particularly advanced prostate cancer – is certainly not a funny or fun disease. But having a laugh can be cathartic and uplifting. Try not to forget – there are wonderful moments to cherish in everyday life, and they are yours to grab hold of.
If you would like a free copy of “The Dattoli Challenge – Evaluating Your Prostate Cancer Treatment Options,” just give us a call. We’ll send you one. 941-365-5599